I met a genetic Scientist today called Dr Arhmed, she wanted lots of information about my family. The clever scientists are going to look at my blood and my chromozones, they think I may have a condition called 'prada willi'.
They had to take lots of blood from me and because I only have tiny veins which have already been used too much, so they had to inject into my head. Daddy stayed with me when they did but Mummy got too upset, and I cried a lot.
The hospital has a groovy sensory room which Mummy and Daddy take me into to chill out. I love the flashy ceiling lights and the fish in the bubble tube.
I also went in to the MRI scanner today to have my brain looked at. It looks like a yellow submarine (not my brain) and its in a room with groovy lights and underwater creatures. They wrapped me up in a yellow blanket, so i looked like a little bug. They put putty in my ears and then headphones so I couldn't hear the loud noises. I was very brave!
Grandma came to visit with Penny today so I had lots of cuddles. Grandma has been looking after Marlee and Lilly at home and brought lots of post for me! So thank you to Sharon for the lovely dress, Michele for the groovy stripy dress and t'shirt, Jane & Tony for the beautiful Cardigan, caterpillar book and crystal and Martin and Belinda for the cool t'shirt and hat.
I was born on the 4th of September 2010. On March the 3rd 2011 at six months old I died, because of a rare genetic disorder called Zellweggers Syndrome. I have lived because of people who loved me more than anything else in the whole world. This is my lifestory...
How to get the best out of this blog...
All blogs post are more recent first, if you want to read about Ellie's Journey I'd suggest starting from the first post back in September 2011 (October Posts) and read on Chronologically from there. It will make more sense and you'll get to meet the little girl who gave my life purpose.
Thank You for reading - every new reader shows that she has met another person and in her short life made such an impact. x
Thank You for reading - every new reader shows that she has met another person and in her short life made such an impact. x
Saturday, 16 October 2010
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